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Affirming and effective sexual orientation and gender identity data collection: barriers, preferences, and recommendations from the community, clinicians, and staff

Year: 2025

Type: article

Abstract: BACKGROUND: Though sexual and gender minority people experience multiple cancer disparities, they remain largely invisible in oncology clinical care. Despite repeated calls by national medical and oncology organizations to address the lack of sexual orientation and gender identity data, there remains a dearth of information to guide research, clinical care, and creation of national priorities to address important health inequities. We aimed to develop effective strategies to collect sexual orientation and gender identity data within our Midwestern Comprehensive Cancer Center based on barriers and facilitators identified by community members, staff, and clinicians. METHODS: We conducted 5 focus groups of sexual and gender minority and cisgender, heterosexual community members (n = 24). We interviewed clinicians and registration staff across 3 ambulatory cancer clinics (n = 27). Rapid qualitative analysis was used to identify themes from focus groups and interviews. RESULTS: Focus group participants' average age was 37 years with a majority identifying as White (79%, n = 19) and non-Hispanic (92%, n = 22); most participants were women (58%, n = 14) and queer (58%, n = 14). Staff and clinicians' average age was 40 years; most identified as White (82%, n = 22), women (82%, n = 22), and straight (82%, n = 22). Qualitative themes to guide sexual orientation and gender identity data collection included comfort and trust, support services, physical space, training, data collection procedures, data access and privacy, and influence on care. CONCLUSIONS: To encourage patient disclosure, a supportive environment where privacy is upheld and health-care staff are trained to competently interact with lesbian, gay, bisexual, transgender, queer, plus patients is needed. We also share our process of sexual orientation and gender identity data collection implementation at our cancer hospital.

Source: JNCI Monographs

DOI: 10.1093/jncimonographs/lgaf012